Grave concerns.

• Author: Brownlee, Shannon
• Position: Book Review

DEATH IS THAT MAN TAKING NAMES by Robert A. Burt University of California Press, $29.95

IN 1989, THE ROBERT WOOD Johnson Foundation funded a five-year, $30 million study of how dying patients and their caretakers make decisions about end-of-life care. The goal of the SUPPORT trial (for Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) was to address the growing national concern over the loss of control that patients experience as death approaches, and to find ways to reduce the number of Americans who suffer prolonged and painful deaths. The first phase of the study, which ultimately included 9,000 patients, simply looked at how well hospitals and caregivers observed DNR, or "do not resuscitate," orders; provided pain-killers; and shared with patients and families decisions concerning such life-prolonging treatments as feeding tubes and mechanical ventilators. This phase of SUPPORT found that physicians often didn't have a clue as to what families and patients wanted; DNR orders were often written only in the last few days of life; and more than half of patients died in substantial pain.

These results seemed at the time to confirm the widely held view that medicine and its practitioners had lost their humanity, and that doctors were abandoning the patients who needed compassion the most. But the subsequent phase of the study called that conclusion into question. Here, dying patients entering the hospital were randomly assigned to one of two groups. The first group received intensive intervention from specially trained nurses, who counseled families and patients about prognoses and medical options and informed doctors day by day about the families' desires regarding life-prolonging treatment and the patients' level of pain. The other group received no intervention, but their interactions with caregivers were monitored. The results of this clinical comparison, writes author Robert Burt, were "stunning: The intensive intervention changed almost nothing ... The most intensive mechanisms to promote rational decision-making based on accurate prognoses and to actively elicit patient choices to guide professional treatment ... had zero [his emphasis] impact on the provision of end-of-life medical care."

It would be easy to conclude that the SUPPORT procedures failed because of the willful and callous disregard of doctors. Indeed, that was how the American Medical Association--a group not generally given to...